The past year saw some significant events for ethics in healthcare practice, touching on the beginning and end of life, and its quality – as you might expect. If you missed any of the headlines mentioned here, there will be plenty to read on the internet – just do a quick search.
MP Stephen Woodworth’s unsuccessful motion in parliament to form a special committee to study the legal definition of when human life begins opened up that issue again, if only briefly. Even after many years of Canada’s existing abortion rights situation, the debate still simmers in some quarters.
A related debate emerged around disclosing the sex of a fetus during or after an ultrasound. Concerns about the selective abortion of female fetuses (among some groups of newer Canadians, as the argument goes) prompted the suggestion that the sex not be disclosed until after 20 weeks when abortions are not so readily performed. Much was debated about this – would it lead to higher risk later abortions? Are such prohibitions the best way to change attitudes? Can we expect subsequent generations will see the sexes more equally if their experience in Canada simply demonstrates this? And what about other equality concerns: We regularly screen for certain sorts of disabilities in utero and support decisions to terminate pregnancies for these reasons. Does this align with our professed value of the equality of persons?
While we see persons as legally equal, the same is not true for the quality of all lives. In extreme cases, some would say certain lives may not be worth living anymore. Examples of this appear in healthcare with increasing frequency, often in two distinctly different categories: A capable person deciding their own life is not one they wish to continue, and a substitute decision maker (SDM) making that judgement for a person so severely and permanently unwell they are incapable of offering an opinion.
The first scenario played out very publicly this year: Gloria Taylor, in British Columbia, won an exemption to current law, meaning someone could assist her to end her life without prosecution before her amyotrophic lateral sclerosis made it unbearable by her standards; Nagui Morcos, in Ontario, decided to end his own life before his Huntington’s made that impossible.
Suicide is not illegal in Canada, but assisting in it is. We often withdraw life-sustaining treatments knowing this will bring about death sooner, but we do not take extra actions that would bring about a death. That thinking is being challenged – by individuals like Gloria and Nagui, but also by the Quebec ‘Dying with Dignity’ Commission’s report recommending legalization of ‘medically assisted death.’
The second scenario, where SDMs are involved, characterizes the stories of Hassan Rasouli and Desmond Watson, which centre on differences of opinion about quality and on the proper process for resolving those differences. Both men are so unwell they cannot be involved in the decision to continue treatment or not. The care providers consider it ‘medically futile’ while the families feel it is essential. The Supreme Court is soon to make a judgement about the process that was followed in Hassan’s case (re: who can make the decision to change the treatment plan, and on what grounds). Most of these tragic situations are resolved without media or courts, though not without a lot of ethical distress for everyone.
Another story, with possible relevance to Hassan, hit the headlines recently. A research team in London, Ontario, used functional MRI (fMRI) technologies to enable limited communication with Scott Routley, a man significantly brain injured since a car accident 12 years ago. Using the same techniques reported in Europe two and half years ago, the research team has determined Scott can reliably answer ‘yes’ and ‘no’ to certain questions. They have even been able get an answer to the question ‘are you in pain’. The answer was no – a likely relief to many. One assumes ‘pain’ was taken to mean physical pain – the more complex question of psychological pain may not have been answered.
Not surprisingly, such advances raise further questions (perhaps pondered by the research ethics board that considered the study): Now that we have a way to ‘connect’ with him, how often should we do it? How long will it be before we can offer Scott more meaningful communication opportunities? Should it be covered by provincial health insurance at some point? And how long before we might offer similar attempts to connect to Hassan or Desmond?
A quality of life issue with immense impact but which rarely gets the same media coverage as the stories above – mental health affects 1 in 5 in Canada, and that includes working people. This leads to some $20 billion in lost productivity, and about $30 billion in healthcare costs. Good news then that the National Standard of Canada for Psychological Health and Safety in the Workplace is due for release shortly. Watch out for that announcement from the Mental Health Commission of Canada.
Finally, amidst all the other stories of the year, I think the last word ought to go out to all of our colleagues in the world of pharmacy – many of whom have made it possible to manage the ongoing shortage of some intravenous drugs due to interruptions in manufacturing by Sandoz and more recently Hospira. Ethicists in Canada have created resource allocation frameworks for making tragic choices if supplies were insufficient to meet critical needs. To date, such choices have been largely avoided by the hard work and collaboration of pharmacists who have kept supplies moving to where they are needed and prescribers informed of what is and what is not available. Kudos to you all!
All of these items warrant a column of their own…so send your questions about any of them to firstname.lastname@example.org with Ask the Ethicist in the subject line.